Girlie brings up interesting question: "So if it’s mca and not dieoff - then when we stop treating - we should feel good? ie if it’s not a herx ??
Or am I way off base... lol"Long answer short: it is both, toxins are the fuel. MCAS is the connector. Symptoms are the result. (so imo minimizing pathogen/toxin load is very important! but the goal is to short circuit the immune response that makes treating intolerable for those of us that have all these consistently similar issues tolerating therapies, otherwise it's hard to reduce pathogen load!)
. My idea is really trying to frame specific type of patient, the ones with massive, amplified, problematic flare dynamics. It might not apply to a wide range of other patients. But for the ones on my end of the bell curve (sensitive, big herxer, etc), some type of dynamic along the lines of what I'm talking about
may be taking place. Truth be told, my intuition is some level of MCAS dynamic is affecting a wider range of patients, but it's just more problematic for those of us at the severe end of the bell curve because it makes treating the actual infections very difficult.
I suspect that pathogen load in body is consistently creating toxins, thusly consistently contributing to a constant lower-level MCAS dynamic that helps manifest baseline symptoms. Basically, you could almost say we are allergic to the toxins, and so when you treat the infection and create die-off it's like shaking a coke bottle, and the immune system is seeing much more of the specific pathogen toxin/debris that drives it crazy in the first place, so the immune system thusly launches an even greater amount of cascading than it does at baseline.
So my theory? MCAS dynamic is also operating at baseline (responding to the fuel for this dynamic/ie toxins, the immune system cascades in response to toxin triggers), but immune system goes into even greater overdrive when higher levels of die-off are created (adding to total toxin burden in that moment, increasing MCAS capacity, which creates an even larger immune system cascade corresponding to further increase in symptoms). When you effectively lower the pathogen load, while temporarily you increase MCAS dynamic with die-off, once you settle to baseline your MCAS dynamic manifests a bit less because the fuel for the fire, the total pathogen load (the trigger) is lower. (at least that's what should happen in theory, in my own case these dynamics generally hold true, but I know for other patients' symptoms can be highly variable even after effective therapies. So this theory I put forth does not explain everything or everyone!)
Is all this correct? I don't know. It's conjecture. There's a lot of variables. Hundreds of different markers are involved. A complex ballet I imagine, with different dances and flavors based on circumstances and the various inputs you are trying, along with fixed factors in body, other environmental circumstances, etc
Walkingbyfaith: Sorry I've been a bit scatter-brained. I just saw your question about
what I'm taking. With the disulfiram I've been getting massive flares, after talking to doc he decided to put me on zyrtec, zantac, singulair, ketotifen. With the option of adding in cromolyn. It's a lot of stuff. I forgo cromonlyn as the other stuff seems to be helping a lot with the flares. In fact I'm trying to see if half-dose ketotifen is good enough dose, the ketotifen is really most helpful of the lot but also gives me woozy side effect! I will likely improvise and taper some of those antihistamines back in weeks to come as flare downcycles in severity as days go by.
And when I talk about
toxins, I really do think many other toxins like mold be also be causative toxin triggers for MCAS. I talk a lot about
the infections because that has been my primary driver. But I would think similar MCAS dynamics are taking place when it comes to mold, immune system, symptoms.
PS. I'm sorry for a lot of the rambling, hope it is not too incoherent or circular in nature. A lot of this is thinking out loud, which is why it's nice to share with you guys to see what you think.
Post Edited (sebreg) : 8/27/2019 9:57:55 PM (GMT-6)